Tuesday, September 28, 2010

I'm normal...but not really

So I went to my family's doctors last Friday. I got half of what I wanted.

First I found out my prolactin level drawn on July 21st was 27. This is only slightly above normal. Normal is anything less than 20. However, I told my doctor that since having my level drawn in July I've started spotting again before my period. She said that "yes, anything above 20, I would expect your cycle to be thrown off". But I reminded her that as of September-ish of last year my prolactin levels were normal, and I continued to have spotting prior to the period I had before I got pregnant with Aidan. She didn't seem to have an answer for that.

She then told me that we couldn't sort out my progesterone issue until my prolactin issue was under control. Okay. So we decided to repeat my bloodwork. I full expected it to be abnormal.

My bloodwork showed my prolactin is 18.8. Officially normal.

So, it is not the reason for the spotting. My doctor doesn't seem to think the spotting is that much of a concern. She informed me that there is no real evidence to support putting women on progesterone therapy to lengthen luteal phases. She ushered me out of her office basically saying that I'm a mystery and she has no treatment options for me. She did not put me on progesterone therapy like I wanted.

The only good news is that she agreed to my request for a referral to a reproductive endocrinologist.

Now, I'm at a loss as to what to do until then. I feel like I'm in the black hole of 'diagnosis unknown'.

I'm TERRIFIED that if we somehow wind up pregnant while not on any hormonal support, or monitoring, we'll lose the pregnancy due to placenta issues. On the other hand I have no idea how long it will be before we get into see the RE, how long it will be before they determine 'what is wrong with us...if anything' or, worst of all, if the RE looks at us and says "Why are you bothering me with your case? You are obviously fertile. What happened to your son was just bad luck...call me back in a year if you haven't gotten pregnant by then".

It would also KILL me not to try...because a baby is what I want more than anything else in the world...and you obviously don't get one without trying!

My family doctor will do no more. The placenta specialist chalked Aidan's death up to bad luck and a 'possible hormonal imbalance'...but since my periods returned on a 'almost perfect' 26 day schedule I must therefore be 'cured'. If the RE says our problems aren't 'important' enough then...WHAT THE FUCK DO WE DO?

We might be too fertile for the RE. Too infertile for the OB. And no longer the problem of my family doctor.

I cried after each appointment. I'm so ANGRY that I'm doing this again. So disappointed and sad that instead of a 6 week old, I have a baby that's been dead 5 months. So afraid we aren't going to get another chance, or that my body is going to fail me and my child again. I just want people to take me seriously. Take my son's death seriously. Agree with me that it's important that it doesn't happen again. Agree to help me.

Agree to care.

What were the medical practitioners attitudes like after your child died? Did they seem caring and willing to investigate? Did you get the answers you wanted/needed? Did it help?


  1. Hey Emily-
    I am so sorry you have to go through this! It is just not fair and no one understands that more than mysef! After the birth of my now 3 year old son I had 2 consecutive miscarriages! And then the following year my son Rylan Jayce died in my arms! It is unbelievably heart breaking! I am learning to deal with my hurt, anger, and sadness but it is a long and lonely road to walk down! Some days are better than others and sometimes it varies hour to hour! After the loss of my son I was forced to have a hysterectomy because the bleeding never stopped I began bleeding at 13 weeks gestation, and bled everyday for 27 weeks! It was awful! SO now on top of my losses I had to come to the realization that the opportunity to carry again could be no more! As hard as it is to deal with that, I had too! Because I have a family that needed me and I was so tired of hurting (physically) I just wanted to have some of my life back! I will be praying for you! Just know that I truly care about you and your awful circumstances! I hate that we even have to meet under these circumstances!
    With Love: Rylan Jayce's mommy-Brittani Krieger

  2. I am so sorry this is the response you are getting, Emily. It is frustrating and infuriating to need help and advice from a doctor who is unwilling, or unable, to do so.

    I had good luck with care providers after Charlotte died. They sat with me, they talked over things with me multiple times, they provided a place for me to question, rage, cry. I don't have advice for you, but I wanted to say I'm sorry you are not receiving the help you need. Wish I could change that for you.

  3. I am so sorry you are struggling without medical professionals to help you.

    I have had good experiences with my doctors here; I wish I could give them to everyone else.

    If you can see another OB or fertility specialist I'd suggest finding a better one! I know not everyone has other options, I think that sucks. Because it's so nice having a physician that listens and has solutions. Everyone deserves that.

    Also, the RE should listen to you and be willing to help. Or else I'll punch them through the internet! I have run across plenty of not-infertile women who have been referred to RE for various issues.

  4. we haven't gotten any answers about kenny's death. my OB's explanation is basically that it was just "bad luck," like you, called it pPROM, but there's part of it that doesn't make sense. she says it wasn't incompetent cervix, b/c i wasn't dilated when i got to the hospital - but if i wasn't dilated, then how in the world did kenny's cord prolapse? (or maybe, how exactly could she tell how dilated i was, with the cord in the way?) i am hoping the peri we see this afternoon might have something more insightful to offer about what happened.

    as far as getting started with an RE - i hope they are willing to listen to you, and that you don't have to wait too long. i will say that when i started w/ mine, i wish they had said, "julie, this can be a long, frustrating process that you will have no control over. let it go now, take it as it comes, and don't get too worked up when things don't happen on your schedule." easier said than done, i know, but i felt like in our initial consultation they made me feel like i would be pregnant within a month or two, but in reality the multiple delays of testing and insurance approval meant we couldn't start our first treatment cycle until 8 months later.

    i hope you get the answers - and the treatment - that will ease your mind, and bring you your rainbow.

  5. I'm so sorry that your family doctor isn't being more helpful. It sucks that you might be too fertile for the RE but too infertile for the OB. It is so hard to move through the world of doctors who don't seem to fully realize the impact of what we have been through, or who just don't care.

    I hope you get to see the RE soon and that that doctor is helpful and caring.

    I've been happy overall with my medical care, but there are a few things I would have liked to happen. My OB was great when I had Jacob. I could tell she cared and I felt safe in her medical knowledge, etc. She called me the next day at home to see how I was and apologized that she couldn't do more. But when I went for the 6 week check up, she said that she didn't have all the autopsy results back yet, just some. She gave me some information, but didn't tell me there was evidence of abruption. I don't know if she just thinks that I don't want to know every little detail (I do) or if she just didn't feel it necessary to tell me. I got a call a few days later that Jacob's chromosomes were normal. I waited another week to call and see if all of the autopsy results were in and was told that the chromosome study was the last test. I wish the nurse had said that on the voicemail she left me.

    I went to my family doctor after my OB appointment and saw a few autopsy reports. I asked for copies of them and there was more information there than my OB told me.

    Then, when I had my miscarriage, my OB was responsive, but I never spoke to her, it all went through the nurse. My OB ordered tests and answered a question for me that I asked the nurse, but I thought it would have been nice if my OB had spoken to me on the phone, given that I had now lost 2 babies in 2.5 months (and I had spoken to her on the phone a few times when I was pregnant with Jacob).

    Maybe this is asking alot, but when I went to see my family doctor 6 weeks after he was born, he came in and said "you've been through something terrible". I just thought it would have been nice if he had taken the time to call me at home when he started getting autopsy results on my baby. He has called me with test results before that were minor...low iron, etc. Why not call when my child died?

  6. Hey Emily. I too, am sorry for your difficulties with doctors. I try to not hate my previous doctors and blame them for what happened. A lot of my anger stems from not just the loss of Liam at 23 weeks but also I had a D&C 6 weeks later due to retained placenta. So frustrating and somehow the D&C makes me mad at myself as well as mad at the doctors. It just seemed like my old set of doctors relied on me to alert them to problems (contractions that were painless that I was unaware of, bleeding still after delivery even though I was told you can bleed for up to 6 weeks) but how was I supposed to know they were problems when I wasn't in pain and/or there were no signs of infection? Truly, I'm an educated person but felt like I was completely lost when I was pregnant and afterward.

    Anyway, we moved to a new state and I was forced to find new doctors. I had a horrible experience with a local OB who gave me his religious opinion rather than his medical opinion during an appointment. That experience felt like a huge setback and again I was left wondering if there were any doctors who could make me feel listened to and cared for. Then, I went to an MFM (peri) who was amazing. Finally I saw a doctor who made me feel like I would be monitored carefully and that something could be done to hopefully prevent a loss again. It was a huge relief!

    So, I wish that for you. It took me months and having some pretty terrible, emotionally draining experiences but finally I feel like I have a doctor who will help me take care of my next pregnancy. Now I just have to get to that next pregnancy but I'm so impatient.

  7. I am so sorry. I can't imagine being stuck like that and not knowing what your next plan should be or what is happening to your body. As frustrating as it is maybe there is hope and there is nothing wrong with you and you will be able to get pregnant and have a completely normal pregnancy. I am fortunate to go to a clinic where there is a team of doctors so my family doctor and OB work together. As well the ER doctor works in the same building so the three of them were really helpful after I lost my son and were pretty much willing to do whatever I needed at the time to help me out.

  8. So sorry you have to go through this. It is hard when it may be that you will never know the reason for losing Aidan. I feel the same way. My situation is a little different of course, but I did find when I was honest with my MFM doctor about my fears going into a future pregnancy he was understanding. He did admit that he wishes he could do something to make sure I don't lose any more babies but that sometimes we just don't understand a lot about pregnancy. He was not planning to do any evaluation or exams other than just meeting with me and I pressed him to examine further the scar tissue they had found with Mikayla's pregnancy at the 20 week scan. He agreed, but he was tenative. At my HSG it was found that I have an impressive uterine synechiae that can affect both my ability to get pregant and carry a pregnancy so it needs to be removed. He admitted to me that he was glad I pushed for the test because he didn't think he would find anything. You have to be your own advocate and be completely honest with your doctors if you are feeling uneasy. In some sense, we also have to trust them at some point as well. For me, I am learning to put my trust more in God to get me through the times I feel like I am not getting answers...I may never get an answer on this side of Heaven.

  9. I'm so sorry you're going through this on top of grieving for Aidan. We were already seeing a RE because of infertility issues so a couple of months after losing Lily we had a consult with them on a plan for moving forward. Our RE's office has always been nothing but amazing with us, I cannot say enough good things about them!
    I know this can all be so overwhelming, but try to take it one step at a time. See what the RE has to say, most of the time they're more than happy to work with you since their services are all out of pocket. Not sure what your insurance coverage is, but most RE's are not covered by the majority of insurance companies as they see having children as "optional" and not necessary...cold I know. Anyway hope you're one of the lucky ones whose insurance covers...none of our IVF tx or anything at our RE's office was covered. Hope that you have a good experience with an RE that helps to provide some answers and reassurance for the future.
    Also regarding the progesterone injections, both my RE and OB said they will have me on these daily for the first 8-9wks of pregnancy (this is standard protocol for IVF treatment) and then I'll go on weekly progesterone wks 16-37 of pregnancy, if I even get to this point.
    Thinking of you & sending love, hope you are able to get some answers soon.

  10. I remember hating to go see my doctor - they didn't seem to know what to do with me, and no one seemed to really care. I was just a person they had to deal with. I, too, wished they would take things more seriously.

    That all changed when I started seeing my RE. I'm so glad you got your referral - I hope your RE is as wonderful as mine is. It's their business to help you get pregnant, in a healthy way, and under the most ideal circumstances. And I have a feeling they will be more proactive than your other doctors.

    I hope you get in to see your RE soon!